Guided by the community: Insights on recruitment science from the African Americans Fighting Alzheimer's in Midlife...

Although Alzheimer's disease and related dementias (ADRDs) are disproportionately high in Black/African American (AA) individuals, this population is under-included in biomarker studies and clinical trials. This underrepresentation contributes to health disparities in treatment and disease outcomes. The Wisconsin Alzheimer's Disease Research Center (ADRC) and the Wisconsin Registry for Alzheimer's Prevention (WRAP) at the University of Wisconsin-Madison have been successfully conducting the African Americans Fighting Alzheimer's in Midlife (AA-FAIM) Project since 2016. The AA-FAIM Project aims to promote the timely, valid detection of ADRD for Black/AA groups and to increase their inclusion in ADRD research.

We describe the infrastructure and engagement strategies of AA-FAIM, a longitudinal research program focused on examining and reducing the health disparities observed in Black/AA individuals facing risk for ADRD. We describe practical, sustainable methods used to meet our recruitment, enrollment, participation, and retention goals.

We report enrollment numbers as evidence of the effectiveness of this work. We attribute our success to several strengths. First, AA-FAIM incorporates the principles of community-based participatory research (CBPR), including strong community partnerships and an active, engaged advisory board. Second, the program is guided by the Participant and Relationship-Centered Research Engagement (PRCRE) and the STEPS models. Third, AA-FAIM uses creative, culturally respectful programs. Fourth, a key element is the partnership between the Academy and the people embedded within the community.

We discuss our experiences establishing and maintaining the AA-FAIM Project and offer insights to increase the representation and inclusion of Black/AA individuals in ADRD studies.